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12/11/2009 05:03 AM

Shunt tubing.

super33chick
super33chick  
Posts: 8
New Member

This morning, as I was trying to get up out of bed, I was stretching, and I kinda felt a weird feeling in my tubing area, and i was scared that something snapped. However, the docto always told me before that there was so much tubing in there that breaking it again s unlikely. What do you think?
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12/11/2009 05:33 AM
HydroPioneer
HydroPioneer  
Posts: 251
Member

Hi Superchick

I Just awake and I get to speak to a SuperchickGrin I don't believe the tubing snapped superchick I think if it did you would be experiencing other symptoms. Yet I am no doctor so if you noticing anything that doesn't seem right of which only you know your body and shunt I would talk to your doctor. If you have any more questions I think you know where my hydrocave is.Laughing I experience sharp shooting pains from my shunt area down my collar bone which feels like someone pressing on your nerve I found this to be the shunt pressing or touching a nerve or also it could be scar tissue being pulled by the shunt. I hope this helps Superchick.


12/11/2009 05:37 AM
super33chick
super33chick  
Posts: 8
New Member

Thankyou for your reply-I just get concerned sometimes!

12/11/2009 06:10 AM
HydroPioneer
HydroPioneer  
Posts: 251
Member

And you should Superchick(I like saying that)Wink We live with hydrocephalus. Keep Pumping SuperChickSmile

01/04/2010 11:19 PM
super33chick
super33chick  
Posts: 8
New Member

well, now I'm experiencing more sensations in the tubing area, especially my abdomen. But, I have to remember, that it's still relatively new I suppose, and it's probably normal to feel weird around the tubing area. It's a little uncomfortable when I lay down though. O well- I know the Lord will take care of me! Smile

01/05/2010 04:47 AM
HydroPioneer
HydroPioneer  
Posts: 251
Member

Hi Superchick I probably chat with you on facebook but I have recruited so mnany here I can't keep trak.LOL How long have has it been since your operation. I can't remember if this is the first time for you with a shunt or not but anyways I had discomfort for a while but it left so I really don't know what to tell you that is unless you know when you should let your doctor know. Please let me know if this continues. You can get me on my other sites also I'll be waiting to hear from you. Take Care Wink

01/05/2010 06:16 AM
tiek72707
Posts: 30
Member

Everyday when I wake up my neck is very stiff and tight on my shunt side. When I stretch my neck, I can feel the scar tissue around my shunt rip and it makes this horrible tearing sound.

The rest of the day I have constant cramping, shooting pain from the shunt down into my neck to my collarbone. I can barely turn my head left or right because my neck is so stiff.

I have been to pain management where they tried 3 nerve blocks thinking that the shunt was pushing on my occipital nerve. Each of the nerve blocks made the pain worse.

After no success at pain management I had my ns remove my entire shunt system from the right side of my head and place a new one on my left side but with the shunt closer to my neck, on the back of my head thinking that the constant throbbing would go away without the tubing running thru the side of my head, but a few weeks after that surgery the cramping and constant throbbing had returned, but now it was worse and focused in my neck. So now if I sit or stand for to long without having my head supported, my neck gets so stiff and cramped that I have to sit and rest it against something for a few hours.

I've been going to physical therapy for a few weeks trying to strengthen my neck, but the tightness and pain have only gotten worse. I've tried massage, but the area below my left ear is so sensitive that touching it makes me want to puke.

I even went to an allergist to see if I was allergic to the shunt material, because I had done a google search for "vp shunt rejection" and found some articles stating a silicone allergy found in a patient that was in his 20's that had his shunt from birth but he had already had 27 revisions in his lifetime. This was very scary for me because I have had 3 revisions in the last year and the pain has gotten worse after each one.

I asked my ns for the shunt when he removed it from my right side. The allergist did a patch test on my back but could neither prove nor disprove that the shunt material caused any type of allergic reaction.

The allergist told me that he read that there is a polyurethane shunt made for patients with the silicone allergy. He also told me that my pain could simply be from a body rejection, where my immune system is very sensitive and does not like the foreign body of the shunt.

Hydropioneer you mentioned a shooting pain from your shunt to your collar bone. What helps with the pain?

Has anyone else heard of the silicone allergy to vp shunts, I told my ns about it and he dismissed me because he didn't think the articles I found were "peer reviewed". I then asked that the next time my shunt clogs if he could use the polyurethane shunt and he told me he had no idea where he could get one or if they even exist.

Has anyone heard of the polyurethane shunting systems? I am desperate for answers! I haven't been to work in over 2 months because I can't sit at my computer for more than an hour without needing a half hour break to go out to my car an rest my head because my neck flares up so bad.

Any help or suggestions would be greatly appreciated


01/05/2010 07:39 AM
HydroPioneer
HydroPioneer  
Posts: 251
Member

Hi Tiek

I see you are going through a rough patch or your neck is. As dor the shooting pain I described they only happen to me once and awhile and they don't call to give you a heads up they are arriving. They don't last long it just a sudden painsaking jolt which one time brought me to my knees. I like you did not know what this was but through chatting with all the people I do I was told it was like you say scar tissue of it could be touching a nerve.

I have also experienced the sore neck which is a common symptom with having a shunt or hydrocephalus at one point last year I had this bad headache and my neck hurt so much I was unable to turn it I had to turn my whole body to look at something.

Keep nagging the doctors because that is what you have to do I know what you are going through.

I must have you on my facebook page if I don't please come over I am there an alful lot as well help with other sites other shunteers have asked me to help them with.Wink


03/30/2014 12:27 PM
AndrewG
 
Posts: 180
Member

I know when my shunt is not workkng or there is a tubing issue, I get pressure vuilt up and pain in my head. Also there is pain where my shunts are. I would suggest if it gets worse to talk to a neurosurgeon. Keep us posted on what's happening.
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